Top

Published in:

Open Access 01-12-2018

Survivorship care planning in gynecologic oncology—perspectives from patients, caregivers, and health care providers

Authors: Belle H. de Rooij, Teresa Hagan Thomas, Kathryn E. Post, Jane Flanagan, Nicole P. M. Ezendam, Jeffrey Peppercorn, Don S. Dizon

Published in: Journal of Cancer Survivorship | Issue 6/2018

Abstract

Purpose

This qualitative study sought to describe the challenges following treatment and the preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers.

Methods

Between July and August 2017, in-depth semi-structured interviews regarding survivorship were conducted at a large academic hospital in the USA among patients who recently completed treatment (< 12 months) for a gynecological cancer (ovarian, endometrial, cervical, and vulvar) and their primary caregivers. A focus group was conducted among health care providers (oncologists, nurses, and fellows). Main themes were identified using descriptive content analysis.

Results

A total of 30 individuals participated in this study (13 patients, 9 caregivers, 8 health care providers). Almost all participants reported a desire for more information on how to address survivorship needs, specifically as they related to side effects, follow-up schedule, and psychological assistance. Despite this uniformly identified need for more information, preferences for survivorship care planning differed across cancer types and individuals, with respect to content, timing, and mode of delivery. Health care providers expressed challenges in communicating with patients about survivorship, a desire to shift post-treatment conversations to the goal of improving quality of life as opposed to focusing on disease recurrence, and an unmet need for disease specific and individualized survivorship care planning.

Conclusions

Patients, caregivers, and health care providers each expressed a need for gynecologic cancer-tailored survivorship care resources.

Implications for Cancer Survivors

The variation of disease types and patient and caregiver needs may require multi-faceted, individualized survivorship care planning.

Available only for authorised users

Siegel RL, Miller KD, Jemal A. Cancer statistics, 2017. CA Cancer J Clin. 2017;67(1):7–30.

Donovan HS, Hartenbach EM, Method MW. Patient-provider communication and perceived control for women experiencing multiple symptoms associated with ovarian cancer. Gynecol Oncol. 2005;99(2):404–11. https://doi.org/10.1016/j.ygyno.2005.06.062.CrossRefPubMed

Ferrell B, Smith S, Cullinane C, Melancon C. Symptom concerns of women with ovarian cancer. J Pain Symptom Manag. 2003;25(6):528–38.CrossRef

Bradley S, Rose S, Lutgendorf S, Costanzo E, Anderson B. Quality of life and mental health in cervical and endometrial cancer survivors. Gynecol Oncol. 2006;100(3):479–86.CrossRef

Greimel ER, Winter R, Kapp KS, Haas J. Quality of life and sexual functioning after cervical cancer treatment: a long-term follow-up study. Psycho-Oncology. 2009;18(5):476–82.CrossRef

Harrington CB, Hansen JA, Moskowitz M, Todd BL, Feuerstein M. It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. The International Journal of Psychiatry in Medicine. 2010;40(2):163–81.CrossRef

Abbott-Anderson K, Kwekkeboom KL. A systematic review of sexual concerns reported by gynecological cancer survivors. Gynecol Oncol. 2012;124(3):477–89.CrossRef

Matulonis UA, Kornblith A, Lee H, Bryan J, Gibson C, Wells C, et al. Long-term adjustment of early-stage ovarian cancer survivors. Int J Gynecol Cancer. 2008;18(6):1183–93. https://doi.org/10.1111/j.1525-1438.2007.01167.x. CrossRefPubMed

Mirabeau-Beale KL, Kornblith AB, Penson RT, Lee H, Goodman A, Campos SM, et al. Comparison of the quality of life of early and advanced stage ovarian cancer survivors. Gynecol Oncol. 2009;114(2):353–9. https://doi.org/10.1016/j.ygyno.2009.05.009.CrossRefPubMed

10.

Ozga M, Aghajanian C, Myers-Virtue S, McDonnell G, Jhanwar S, Hichenberg S, et al. A systematic review of ovarian cancer and fear of recurrence. Palliat Support Care. 2015;13(6):1771–80. https://doi.org/10.1017/S1478951515000127.CrossRefPubMedPubMedCentral

11.

Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in translation. Committee on Cancer Survivorship: Improving Quality Care and Quality of Life, National Cancer Policy Board. Washington, DC: National Academies Press; 2006.

12.

Boekhout AH, Maunsell E, Pond GR, Julian JA, Coyle D, Levine MN, et al. A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial. J Cancer Surviv. 2015;9(4):683–91.CrossRef

13.

Brothers BM, Easley A, Salani R, Andersen BL. Do survivorship care plans impact patients’ evaluations of care? A randomized evaluation with gynecologic oncology patients. Gynecol Oncol. 2013;129(3):554–8.CrossRef

14.

Grunfeld E, Julian JA, Pond G, Maunsell E, Coyle D, Folkes A, et al. Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol. 2011;29(36):4755–62.CrossRef

15.

Hershman DL, Greenlee H, Awad D, Kalinsky K, Maurer M, Kranwinkel G, et al. Randomized controlled trial of a clinic-based survivorship intervention following adjuvant therapy in breast cancer survivors. Breast Cancer Res Treat. 2013;138(3):795–806.CrossRef

16.

Nicolaije KA, Ezendam NP, Vos MC, Pijnenborg JM, Boll D, Boss EA, et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol. 2015;33(31):3550–9.CrossRef

17.

de Rooij BH, Ezendam NPM, Nicolaije KAH, Caroline Vos M, Pijnenborg JMA, Boll D, et al. Effects of survivorship care plans on patient reported outcomes in ovarian cancer during 2-year follow-up—the ROGY care trial. Gynecol Oncol. 2017;145(2):319–28. https://doi.org/10.1016/j.ygyno.2017.02.041.CrossRefPubMed

18.

de Rooij BH, Ezendam NP, Nicolaije KA, Vos MC, Pijnenborg JM, Boll D, et al. Effects of survivorship care plans on patient reported outcomes in ovarian cancer during 2-year follow-up—the ROGY Care trial. Gynecol Oncol. 2017;145:319–28.CrossRef

19.

Nekhlyudov L, Ganz PA, Arora NK, Rowland JH. Going beyond being lost in transition: a decade of progress in cancer survivorship. Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2017;35(18):1978–81. https://doi.org/10.1200/JCO.2016.72.1373.CrossRef

20.

Ozga M, Aghajanian C, Myers-Virtue S, McDonnell G, Jhanwar S, Hichenberg S, et al. A systematic review of ovarian cancer and fear of recurrence. Palliat Support Care. 2015;13(6):1771–80.CrossRef

21.

Petricone-Westwood D, Lebel S. Being a caregiver to patients with ovarian cancer: a scoping review of the literature. Gynecol Oncol. 2016;143(1):184–92.CrossRef

22.

Butow PN, Price MA, Bell ML, Webb PM, Friedlander M, Group AOCS, et al. Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs. Gynecol Oncol. 2014;132(3):690–7.CrossRef

23.

Stafford L, Judd F. Partners of long-term gynaecologic cancer survivors: psychiatric morbidity, psychosexual outcomes and supportive care needs. Gynecol Oncol. 2010;118(3):268–73.CrossRef

24.

de Rooij BH, Ezendam NP, Nicolaije KA, Lodder P, Vos MC, Pijnenborg JM, et al. Survivorship care plans have a negative impact on long-term quality of life and anxiety through more threatening illness perceptions in gynecological cancer patients: the ROGY care trial. Qual Life Res. 2018;27(6):1533–44.CrossRef

25.

Nicolaije KA, Ezendam NP, Pijnenborg JM, Boll D, Vos MC, Kruitwagen RF, et al. Paper-based survivorship care plans may be less helpful for cancer patients who search for disease-related information on the internet: results of the Registrationsystem Oncological Gynecology (ROGY) Care randomized trial. J Med Internet Res. 2016;18(7):e162.CrossRef

26.

Brennan M, Gormally J, Butow P, Boyle F, Spillane A. Survivorship care plans in cancer: a systematic review of care plan outcomes. Br J Cancer. 2014;111(10):1899–908.CrossRef

27.

Mayer DK, Birken SA, Check DK, Chen RC. Summing it up: an integrative review of studies of cancer survivorship care plans (2006-2013). Cancer. 2015;121(7):978–96. https://doi.org/10.1002/cncr.28884. CrossRefPubMed

28.

Nicolaije KA, Husson O, Ezendam NP, Vos MC, Kruitwagen RF, Lybeert ML, et al. Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry. Patient Educ Couns. 2012;88(3):427–35. https://doi.org/10.1016/j.pec.2012.05.002.CrossRefPubMed

29.

Jones JM, Ferguson S, Edwards E, Walton T, McCurdy N, Howell D. Experiences of care delivery: endometrial cancer survivors at end of treatment. Gynecol Oncol. 2012;124(3):458–64.CrossRef

Title: Survivorship care planning in gynecologic oncology—perspectives from patients, caregivers, and health care providers
Authors: Belle H. de Rooij
Teresa Hagan Thomas
Kathryn E. Post
Jane Flanagan
Nicole P. M. Ezendam
Jeffrey Peppercorn
Don S. Dizon
Publication date: 01-12-2018
Publisher: Springer US
Published in: Journal of Cancer Survivorship / Issue 6/2018
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-018-0713-9

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

At a glance: The STEP trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

Implications for Cancer Survivors

Please log in to get access to this content

Other articles of this Issue 6/2018

Barriers to physical activity: a study of academic and community cancer survivors with pain

Quality of diabetes care in breast, colorectal, and prostate cancer

Correlates of smoking status in cancer survivors

A smoking cessation and pain management program for cancer survivors

The effect of comorbidities on outcomes in colorectal cancer survivors: a population-based cohort study

Cognitive challenges while at work and work output in breast cancer survivors employed in a rapidly evolving economy

Keynote webinar | Spotlight on antibody–drug conjugates in cancer